TheRaceForGrace.com

Dear Friends of Grace,
I think of you all so often and feel negligent when I know I owe you an update. God bless you all for following our journey along with us. It has been quite an incredible journey. David and I have been looking back lately at how far we’ve come. Grace began deteriorating approximately 3 years ago, when we started to notice regression in her speech and behavior. The random episodes of screaming that eventually came to be a continual part of her life and suffering began about 3 years ago. Three years ago, I was preparing to give birth to my fifth child and wondering how in the world I would manage a new baby AND Grace plus the other 3 children!
Three years ago, if I had a looking glass into our future, I probably would have gone into an unrousable state of shock. Thinking back on how many nights I would put Grace to bed and like a sleeping giant, I knew that at an unexpected and dark hour in the night, she would wake up screaming and David and I never knew if we would have the ability to help her stop. Often times, only large amounts of potent drugs pumped into her body against her will would help and often even that was only temporary and the cycle would begin again.
So many people wonder how I survive (more…)

I’ve wanted to share Karly’s website with Race for Grace friends…this is a 23 year old girl with Rett who through technology and facilitated communication, can share her thoughts with the world about herself and Rett.
It’s absolutely amazing. I want you to learn more Grace and Karly and other girls with Rett Syndrome. Mental Retardation is not part of their disease. Dr. Andreas Rett always believed this. They are intellectually sound but trapped in a body with a brain that is so terribly broken and the worst part is they know it’s broken because they are smart. I remember when Grace understood everything I said when she was 2. She would do what I asked her to do, follow little commands and laugh at appropriate times when things were said in her presence, so I see more clearly now that yes, she is smart. My friend used to say that she thought Grace was one of those super intelligent kids that just don’t talk. Think Stephen Hawkins. If it wasn’t for technology, he’d be forgotten in a nursing home somewhere. It’s a disease of the body and movement with many medical complications but not of the intellect. In some ways, it’s more heartbreaking because I feel so sad for her to have to live knowing how disabled she really is. In other ways, it’s refreshing because now when I wonder if she undertands what I’m telling her, I just assume that she does and I keep on talking to her.

Karly’s website - Inspired by Love